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Lymphoma - Non-Hodgkin - Childhood - Overview

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2015

ON THIS PAGE: You will find some basic information about this disease and the parts of the body it may affect. This is the first page of Cancer.Net’s Guide to Childhood Non-Hodgkin Lymphoma. To see other pages, use the menu on the side of your screen. Think of that menu as a roadmap to this full guide. 

About the lymphatic system

The lymphatic system is made up of thin tubes that branch out to all parts of the body. The lymph system carries lymph, a colorless fluid containing lymphocytes. Lymphocytes are a type of white blood cell that are part of our immune system and help fight germs in the body. B-lymphocytes, also called B cells, make antibodies to fight bacteria. T-lymphocytes, also called T cells, kill viruses and foreign cells and trigger the B cells to make antibodies.

Groups of tiny, bean-shaped organs called lymph nodes are located throughout the body at different sites in the lymphatic system. The largest areas of lymph nodes are found in the neck, chest, underarms, abdomen, pelvis and groin. Other parts of the lymphatic system include the spleen, which makes lymphocytes and filters the blood. The thymus is an organ under the breastbone. And the tonsils are located in the throat and the bone marrow, which are the spongy red tissue inside bones that makes white blood cells, which are cells that fight infection. Tonsils also make red blood cells, which carry oxygen throughout the body, and platelets, which are cells that help the blood to clot.

About non-Hodgkin lymphoma

Non-Hodgkin lymphoma (NHL) is a term that refers to a group of several, very different types of lymphoma. Lymphoma is a cancer of the lymphatic system. Lymphoma usually begins when healthy cells in the lymphatic system change and grow uncontrollably, which may form a tumor. Occasionally, lymphoma can also begin outside the lymph node system, called extranodal, especially in children.

Because lymph tissue is found in so many parts of the body, NHL can start almost anywhere and can spread to almost any organ in the body. It most often begins in the lymph nodes, liver, or spleen but can also involve the stomach, intestines, skin, thyroid gland, or any other part of the body. 

This section covers NHL in children. Learn more about adult NHL.

Types of NHL in children

There are three major categories of NHL in children. The category is identified by how the cells look under a microscope.

  • Burkitt lymphoma. This type of B-cell lymphoma commonly affects the bone marrow and central nervous system, which means the brain and spinal cord. Burkitt lymphoma is one of the fastest growing types of cancer. It most often develops in the abdomen and may spread to other organs, including the brain. Burkitt lymphoma accounts for about 40% of NHL in children in the United States.

  • Large cell lymphoma (LCL). LCL, which accounts for about 25% of childhood NHL, may develop in the throat, abdomen, lymph tissue of the neck, or near the thymus. LCL is further classified into subtypes. The most common subtypes of LCL include large B-cell lymphoma (15%), which develops from B cells, and anaplastic large cell lymphoma (ALCL; 10%), which commonly develops from T cells but can arise rarely from B cells.

  • Lymphoblastic lymphoma (LBL). LBL accounts for about 30% of all childhood NHL. It most often develops in lymph nodes in the chest area (mediastinum) behind the breastbone (near the thymus gland) and can spread to the surface of the brain, the bone marrow, other lymph nodes, and the membranes surrounding the heart and lungs.

Looking for More of an Overview?

If you would like additional introductory information, explore these related items. Please note these links will take you to other sections on Cancer.Net:

  • ASCO Answers Fact Sheet: Read a one-page fact sheet (available as a PDF) that offers an easy-to-print introduction to this type of cancer.

  • Cancer.Net Patient Education Videos:  View two short videos led by ASCO experts in lymphoma and childhood cancers that provide basic information and areas of research.

The next section in this guide is Statistics and it helps explain how many people are diagnosed with this disease and general survival rates. Or, use the menu on the side of your screen to choose another section to continue reading this guide.   

Lymphoma - Non-Hodgkin - Childhood - Statistics

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2015

ON THIS PAGE: You will find information about how many children and adolescents are diagnosed with this type of lymphoma each year. You will also learn some general information on surviving the disease. Remember, survival rates depend on several factors. To see other pages, use the menu on the side of your screen.

NHL accounts for about 7% of all cancers in children and teens under age 20. It is the fourth most common cancer diagnosed in children age 14 and younger. This year about 800 children will be diagnosed with NHL. NHL occurs 2 to 3 times more often in boys than girls. 

The 5-year survival rate tells you what percent of children live at least 5 years after the cancer is found. Percent means how many out of 100. In general, the 5-year survival rate for children with NHL is about 89%. However, it is important to note that this depends on several factors, including the specific subtype of NHL and the stage of disease. Children with NHL who are alive and disease-free after 5 years are usually considered “cured” because it is rare for childhood NHL to return after that much time.

It is important to remember that statistics on how many children survive this type of cancer are an estimate. The estimate comes from data based on children with this cancer in the United States each year. So, your own child’s risk may be different. Doctors cannot say for sure how long any child will live with NHL. Also, experts measure the survival statistics every 5 years. This means that the estimate may not show the results of better diagnosis or treatment available for less than 5 years. Learn more about understanding statistics.

Statistics adapted from the American Cancer Society’s (ACS) publication, Cancer Facts & Figures 2016, the ACS website, and the National Cancer Institute.

The next section in this guide is Medical Illustrations. It offers drawings of body parts often affected by this disease. Or, use the menu on the left side of your screen to choose another section to continue reading this guide.

Lymphoma - Non-Hodgkin - Childhood - Medical Illustrations

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2015

ON THIS PAGE: You will find a basic drawing bout the main body parts affected by this disease. To see other pages, use the menu on the side of your screen.

Childhood Lymphoma Anatomy

Larger image

The next section in this guide is Risk Factors and it explains what factors may increase the chance of developing this disease. Or, use the menu on the side of your screen to choose another section to continue reading this guide.

Lymphoma - Non-Hodgkin - Childhood - Risk Factors

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2015

ON THIS PAGE: You will find out more about the factors that increase the chance of developing this type of cancer. To see other pages, use the menu on the side of your screen.

A risk factor is anything that increases a person’s chance of developing cancer. Although risk factors often influence the development of cancer, most do not directly cause cancer. Some people with several risk factors never develop cancer, while others with no known risk factors do.

Although the exact cause of NHL is unknown, some children seem to have a slightly higher risk of developing the disease are those who:

  • Have had illnesses related to the Epstein-Barr virus, which is the virus that causes infectious mononucleosis, which is also called “mono.”

  • Have acquired immune deficiency syndrome (AIDS)

  • Have received an organ transplantation

  • Were born with deficiencies in their immune system

  • Have been treated with certain drugs for other types of cancer

  • Take phenytoin (Dilantin), a drug used to control seizures, but this is rare

The next section in this guide is Symptoms and Signs and it explains what body changes or medical problems this disease can cause. Or, use the menu on the side of your screen to choose another section to continue reading this guide.  

Lymphoma - Non-Hodgkin - Childhood - Symptoms and Signs

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2015

ON THIS PAGE: You will find out more about body changes and other things that can signal a problem that may need medical care. To see other pages, use the menu on the side of your screen.

Children with NHL may experience the following symptoms or signs. Sometimes, children with NHL do not show any of these symptoms. Or, these symptoms may be caused by a medical condition that is not cancer. The symptoms of NHL may vary depending on where the cancer starts and what organ is involved.

General symptoms may include:

  • Swelling or lumps in the lymph nodes located in the abdomen, groin, neck, or underarm.  Swollen lymph nodes may join together to form a mass or tumor.

  • Fever that is not associated with an illness

  • Unexplained weight loss

  • Sweating and chills

  • Extreme fatigue (tiredness)

Symptoms related to tumor location may include:

  • A swollen belly, caused by a large tumor in the abdomen

  • Painful urination and bowel movements, caused by fluid build-up and a tumor around the kidneys and intestines

  • Difficulty breathing, caused by a tumor in the chest (mediastinum) near the windpipe

A serious symptom of NHL is superior vena cava syndrome (SVCS). In SVCS, a tumor in the chest behind the breastbone blocks the flow of blood in the vein that carries blood from the head and arms to the heart. This causes the head and arms to swell. SVCS is life-threatening and requires emergency medical attention.

If you are concerned about one or more of the symptoms or signs on this list, please talk with your child’s doctor. The doctor will ask how long and how often your child has been experiencing the symptom(s), in addition to other questions. This is to help find out the cause of the problem, called a diagnosis.

If cancer is diagnosed, relieving symptoms remains an important part of cancer care and treatment. This may also be called symptom management, palliative care, or supportive care. Be sure to talk with your child’s health care team about symptoms your child experiences, including any new symptoms or a change in symptoms.

The next section in this guide is Diagnosis and it explains what tests may be needed to learn more about the cause of the symptoms. Or, use the menu on the side of your screen to choose another section to continue reading this guide.  

Lymphoma - Non-Hodgkin - Childhood - Diagnosis

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2015

ON THIS PAGE: You will find a list of the common tests, procedures, and scans that doctors can use to find out what’s wrong and identify the cause of the problem. To see other pages, use the menu on the side of your screen.

Doctors use many tests to diagnose cancer and find out if it has spread to another part of the body, called metastasis. Some tests may also determine which treatments may be the most effective. A biopsy is the only way to make a definitive diagnosis of lymphoma. Imaging tests may be used to find out whether the cancer has spread.

This list describes options for diagnosing NHL, and not all tests listed will be used for every person. Your child’s doctor may consider these factors when choosing a diagnostic test:

  • Age and medical condition

  • Type of cancer suspected

  • Signs and symptoms

  • Previous test results

The doctor will first perform a physical examination and take a complete medical history to help determine if a child has NHL. In addition, the following tests may be used:

  • Biopsy. A biopsy is the removal of a small amount of tissue for examination under a microscope. Other tests can suggest that cancer is present, but only a biopsy can make a definite diagnosis. A pathologist then analyzes the sample(s). A pathologist is a doctor who specializes in interpreting laboratory tests and evaluating cells, tissues, and organs to diagnose disease. If the tumor is near the surface, a local anesthetic is usually given to numb the biopsy area before the procedure. If it is deeper inside the body, a general anesthetic is usually given to block the awareness of pain.

  • Bone marrow aspiration and biopsy. These two procedures are similar and often done at the same time to examine the bone marrow. Bone marrow has both a solid and a liquid part. A bone marrow aspiration removes a sample of the fluid with a needle. A bone marrow biopsy is the removal of a small amount of solid tissue using a needle.

    A pathologist then analyzes the sample(s).  A common site for a bone marrow aspiration and biopsy is the pelvic bone, which is located in the lower back by the hip. The skin in that area is usually numbed with medication beforehand, and other types of anesthesia (medication to block the awareness of pain) may be used. 

  • Lumbar puncture (spinal tap). A lumbar puncture is a procedure in which a doctor uses a needle to take a sample of cerebral spinal fluid (CSF) to look for cancer cells, blood, or tumor markers. Tumor markers are substances found in higher than normal amounts in the blood, urine, or body tissues of people with certain types of cancer. CSF is the fluid that flows around the brain and the spinal cord. Doctors generally give an anesthetic to numb the lower back before the procedure.

  • Cytogenetic analysis. A pathologist may examine the pairs of chromosomes (strings of DNA that contain genes) in the tumor from the biopsy under the microscope to check for chromosomal abnormalities. This helps the doctor identify the subtype of NHL and plan treatment.

  • Flow cytometry and immunocytochemistry. These tests help the doctor determine the subtype of NHL. In a flow cytometry test, cells from the lymph nodes, bone marrow, or blood are removed and treated with a fluorescent, dye-equipped antibody that attaches to DNA. The cells are then passed in front of a laser beam, which allows a special computer to measure their DNA level. Higher amounts of DNA than normal may indicate cancer. During an immunocytochemistry test, fluorescent antibodies or immunoperoxidase staining may be used to determine the subtype of NHL.

Imaging tests

To determine where the cancer is and whether it has spread, the doctor may use the following imaging tests:

  • X-ray. An x-ray is a way to create a picture of the tissues and organs inside of the body using a small amount of radiation. A chest x-ray is the most common type of x-ray taken for diagnosing NHL.

  • Computed tomography (CT or CAT) scan. A CT scan creates a three-dimensional picture of the inside of the body with an x-ray machine. A computer then combines these images into a detailed, cross-sectional view that shows any abnormalities or tumors. A CT scan can also be used to measure the tumor’s size. Sometimes, a special dye called a contrast medium is given before the scan to provide better detail on the image. This dye can be injected into a patient’s vein or given as a pill to swallow.

  • Magnetic resonance imaging (MRI). An MRI uses magnetic fields, not x-rays, to produce detailed images of the body. MRI can also be used to measure the tumor’s size. A special dye called a contrast medium is given before the scan to create a clearer picture. This dye can be injected into a patient’s vein or given as a pill to swallow.

  • Bone scan. A bone scan uses a radioactive tracer to look at the inside of the bones. The tracer is injected into a patient’s vein. It collects in areas of the bone and is detected by a special camera. Healthy bone appears gray to the camera, and areas of injury, such as those caused by cancer, appear dark.

  • Positron emission tomography (PET) scan. A PET scan is a way to create pictures of organs and tissues inside the body. A small amount of a radioactive sugar substance is injected into the patient’s body. This sugar substance is taken up by cells that use the most energy. Because cancer tends to use energy actively, it absorbs more of the radioactive substance. A scanner then detects this substance to produce images of the inside of the body.

The information from PET scans is often used with the information from a CT scan, MRI, and physical examination to decide if cancer is present in tissues. It can help show the difference between benign (noncancerous) findings from a CT scan or MRI and malignant (cancerous) tumors that may not be clear on a CT scan or MRI. The exact accuracy and role of PET scanning in NHL is not yet clear, although tumors that contain lymphoma cells often show up on a PET scan. In the future, a PET scan may help monitor aggressive types of lymphoma and the disease’s response to treatment.

After diagnostic tests are done, your child’s doctor will review all of the results with you. If the diagnosis is NHL, these results also help the doctor describe the cancer; this is called staging.

The next section in this guide is Stages, and it explains the system doctors use to describe the extent of the disease. Or, use the menu on the side of your screen to choose another section to continue reading this guide.  

Lymphoma - Non-Hodgkin - Childhood - Stages

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2015

ON THIS PAGE: You will learn about how doctors describe a cancer’s growth or spread. This is called the stage. To see other pages, use the menu on the side of your screen.

Staging is a way of describing where the cancer is located, if or where it has spread, and whether it is affecting other parts of the body. Doctors use diagnostic tests to find out the cancer's stage, so staging may not be complete until all the tests are finished. Knowing the stage helps the doctor to decide what kind of treatment is best and can help predict a child's prognosis, which is the chance of recovery. There are different stage descriptions for different types of cancer.

Doctors use the following stages to describe NHL in children:

Stage I

Describes cancer that occurs in only one area, either above or below the diaphragm, the large breathing muscle that separates the chest and abdomen.

Stage II

Describes a tumor that may occur in one area and surrounding lymph nodes, or it may be found in two or more lymph nodes or other areas on the same side of the diaphragm.

Stage III

Describes any of these four cases:

  • Cancer occurs in tissue or lymph nodes on both sides of the diaphragm.

  • Cancer started in the chest (mediastinum).

  • Cancer started in the abdomen and spread throughout the abdomen and cannot be completely removed with surgery.

  • Cancer is found in the area around the spine.

Stage IV

Describes cancer that is found in the bone marrow, spinal cord, and/or brain.

Recurrent

Recurrent NHL is NHL that has come back after treatment. If the cancer does return, there will be another round of tests to learn about the extent of the recurrence. These tests and scans are often similar to those done at the time of the original diagnosis.

Source: National Cancer Institute.

Information about the cancer’s stage will help the doctor recommend a specific treatment plan. The next section in this guide is Treatment Options. Or, use the menu on the side of your screen to choose another section to continue reading this guide.  

Lymphoma - Non-Hodgkin - Childhood - Treatment Options

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2015

ON THIS PAGE: You will learn about the different ways doctors use to treat children with NHL. To see other pages, use the menu on the side of your screen.

In general, cancer in children is uncommon, so it can be hard for doctors to plan treatments unless they know what has been most effective in other children. That’s why more than 60% of children with cancer are treated as part of a clinical trial. Clinical trials are research studies that compare standard treatments (the best known treatments available) with newer approaches to treatments that may be more effective. Clinical trials may test such approaches as a new drug, a new combination of standard treatments, or new doses of current therapies. Studying new treatments involves careful monitoring using scientific methods and all participants are followed closely to track their health and progress.

To take advantage of these newer treatments, children with cancer should be treated at a specialized cancer center. Doctors at these centers have extensive experience in treating children with cancer and have access to the latest research. A doctor who specializes in treating children with cancer is called a pediatric oncologist. If a pediatric cancer center is not nearby, general cancer centers sometimes have pediatric specialists who are able to be part of your child’s care.  

In many cases, a team of doctors works with a child and the family to provide care; this is called a multidisciplinary team. Pediatric cancer centers often have extra support services for children and their families, such as child life specialists, dietitians, physical and occupational therapists, social workers, and counselors. Special activities and programs to help your child and family cope may also be available. These services can reduce emotional pain and financial concerns and should be used to the fullest extent possible.

Descriptions of the most common treatment options for NHL are listed below. Four main types of treatment are used for NHL in children: chemotherapy, immunotherapy, radiation treatment, and stem cell/bone marrow transplantation. Sometimes, the treatments are used in combination. Treatment options and recommendations depend on several factors, including the type and stage of cancer, possible side effects, and the patient’s preferences and overall health. Take time to learn about your child’s treatment options and be sure to ask questions about things that are unclear. Also, talk about the goals of each treatment with your child’s doctor and what your child can expect while receiving the treatment.  Learn more about making treatment decisions.

The treatment of childhood NHL often involves prolonged hospital stays during each treatment cycle (one to two weeks). Some of the treatments may cause significant mucositis (inflammation of the mucous membranes) that may lead to pain, discomfort, and difficulty eating and drinking. Be sure to talk with your child’s health care team about ways to relieve such side effects. Care for side effects is an important part of your child’s overall treatment plan.

Chemotherapy

Chemotherapy is the primary treatment for NHL. Chemotherapy is the use of drugs to destroy cancer cells, usually by stopping the cancer cells’ ability to grow and divide. Chemotherapy is given by a pediatric or medical oncologist, a doctor who specializes in treating cancer with medication.

Systemic chemotherapy gets into the bloodstream to reach cancer cells throughout the body. Common ways to give chemotherapy include an intravenous (IV) tube placed into a vein using a needle or in a pill or capsule that is swallowed (orally). In some cases, chemotherapy may be injected into the cerebral spinal fluid (CSF). Chemotherapy delivered by any of these ways eventually enters the bloodstream to reach cancer cells throughout the body.

A chemotherapy regimen (schedule) usually consists of a specific number of cycles given over a set period of time. A patient may receive one drug at a time or combinations of different drugs at the same time.

Because chemotherapy attacks rapidly dividing cells, including those in normal tissues such as the hair, lining of the mouth, intestines, and bone marrow, children receiving chemotherapy may lose their hair, develop mouth sores, or have nausea and vomiting. In addition, chemotherapy may lower the body’s resistance to infection, lead to increased bruising and bleeding, and cause fatigue. These side effects can be controlled during treatment and usually go away after chemotherapy is completed. The severity of the side effects depends on the type and amount of the drug being given and the length of time the child receives the drug.

Treatment for NHL often includes drugs such as cyclophosphamide, doxorubicin, vincristine, prednisone, 6-mercaptopurine, methotrexate, cytarabine, asparaginase, and sometimes ifosfamide and etoposide. Your child’s doctor  may decide to use a specific drug based on the subtype or stage.

Learn more about the basics of chemotherapy and preparing for treatment. The medications used to treat cancer are continually being evaluated. Talking with your child’s doctor is often the best way to learn about the medications prescribed for your child, their purpose, and their potential side effects or interactions with other medications. Learn more about your prescriptions by using searchable drug databases.

Immunotherapy

Immunotherapy, also called biologic therapy, is designed to boost the body's natural defenses to fight the cancer. It uses materials made either by the body or in a laboratory to improve, target, or restore immune system function. Learn more about the basics of immunotherapy.

Radiation therapy

Radiation therapy is the use of high-energy x-rays or other particles to destroy cancer cells. A doctor who specializes in giving radiation therapy to treat cancer is called a radiation oncologist. The most common type of radiation therapy is called external-beam radiation therapy, which is radiation given from a machine outside the body. A radiation therapy regimen (schedule) usually consists of a specific number of treatments given over a set period of time.

Radiation therapy for NHL in children is generally used only in emergency or life-threatening situations. For example, it may be used to treat pressure from a tumor on the windpipe or spinal cord. Also, it may be used if the lymphoma affects the central nervous system (CNS; brain and spine) at the time of diagnosis.

Side effects from radiation therapy include fatigue, mild skin reactions, upset stomach, and loose bowel movements. Most side effects go away soon after treatment is finished. Learn more about the basics of radiation therapy.

Stem cell transplantation/bone marrow transplantation

A stem cell transplant is a medical procedure in which bone marrow that contains cancer is replaced by highly specialized cells, called hematopoietic stem cells, that develop into healthy bone marrow. Hematopoietic stem cells are blood-forming cells found both in the bloodstream and in the bone marrow. Today, this procedure is more commonly called a stem cell transplant rather than bone marrow transplant, because it is the stem cells that are typically being transplanted, not the actual bone marrow tissue.

Before recommending transplantation, doctors will talk with the patient about the risks of this treatment and consider several other factors, such as the type of NHL, results of any previous treatment, and the patient’s age and general health.

There are two types of stem cell transplantation, depending on the source of the replacement blood stem cells: allogeneic (ALLO) and autologous (AUTO). ALLO uses donated stem cells, while AUTO uses the patient’s own stem cells. In both types, the goal is to destroy all of the cancer cells in the marrow, blood, and other parts of the body using high doses of chemotherapy and/or radiation therapy and then allow replacement blood stem cells to create healthy bone marrow. Learn more about the basics of stem cell and bone marrow transplantation

Getting care for symptoms and side effects

Cancer and its treatment often cause side effects. In addition to treatment to slow, stop, or eliminate the cancer, an important part of cancer care is relieving a child’s symptoms and side effects. This approach is called palliative or supportive care, and it includes supporting the patient with his or her physical, emotional, and social needs.

Palliative care is any treatment that focuses on reducing symptoms, improving quality of life, and supporting patients and their families. Any person, regardless of age or type and stage of cancer, may receive palliative care. It works best when palliative care is started as early as needed in the cancer treatment process. People often receive treatment for the cancer and treatment to ease side effects at the same time. In fact, children who receive both often have less severe symptoms, better quality of life, and report they are more satisfied with treatment.

Palliative treatments vary widely and often include medication, nutritional changes, relaxation techniques, emotional support, and other therapies. Your child may also receive palliative treatments similar to those meant to eliminate the cancer, such as chemotherapy, or radiation therapy. Talk with your child’s doctor about the goals of each treatment in the treatment plan.

Before treatment begins, talk with your child’s health care team about the possible side effects of your specific treatment plan and palliative care options. And during and after treatment, be sure to tell your child’s doctor or another health care team member if your child is experiencing a problem so it can be addressed as quickly as possible. Learn more about palliative care

 Remission and the chance of recurrence

A remission is when NHL cannot be detected in the body and there are no symptoms. This may also be called having “no evidence of disease” or NED.  

A remission may be temporary or permanent. This uncertainty causes many people to worry that the cancer will come back. While many remissions are permanent, it’s important to talk with your child’s doctor about the possibility of the cancer returning. Understanding your child’s risk of recurrence and the treatment options may help you feel more prepared if the NHL does return. Learn more about coping with the fear of recurrence.

If the cancer does return after the original treatment, it is called recurrent cancer. It may come back in the same place (called a local recurrence), nearby (regional recurrence), or in another place (distant recurrence).

When this occurs, a cycle of testing will begin again to learn as much as possible about the recurrence. After testing is done, your child’s doctor will talk with you about treatment options. Often the treatment plan will include the therapies described above such as chemotherapy and bone marrow/stem cell transplantation but they may be used in a different combination or given at a different pace. Your child’s doctor may also suggest clinical trials that are studying new ways to treat this type of recurrent cancer. Whichever treatment plan you choose, palliative care will be important for relieving symptoms and side effects.

Choice of treatment for recurrent NHL depends on three factors:

  • Whether the tumor came back in the same place or in another part of the body

  • The type of treatment the child had for the original tumor

  • The overall health of the child

People with recurrent cancer often experience emotions such as disbelief or fear. Patients and their families are encouraged to talk with their health care team about these feelings and ask about support services to help them cope. Learn more about dealing with cancer recurrence.

If treatment fails

Although treatment is successful for the majority of children with NHL, sometimes it is not. If a child’s cancer cannot be cured or controlled, this is called advanced or terminal cancer. This diagnosis is stressful, and advanced cancer may be difficult to discuss. However, it is important to have open and honest conversations with your child’s doctor and health care team to express your family’s feelings, preferences, and concerns. The health care team is there to help, and many team members have special skills, experience, and knowledge to support patients and their families.

Parents or guardians are encouraged to think about where the child would be most comfortable: at home, in a home-like setting elsewhere, in the hospital, or in a hospice environment. Hospice care is a type of palliative care for people who are expected to live less than six months. It is designed to provide the best possible quality of life for people who are near the end of life. Nursing care and special equipment can make staying at home a workable alternative for many families. Some children may be happier if they can arrange to attend school part-time or keep up other activities and social connections. The child’s health care team can help parents or guardians decide on an appropriate level of activity. Making sure a child is physically comfortable and free from pain is extremely important as part of end-of-life care. Learn more about caring for a terminally ill child and advanced cancer care planning.

The death of a child is an enormous tragedy, and families may need support to help them cope with the loss. Pediatric cancer centers often have professional staff and support groups to help with the process of grieving. Learn more on grieving the loss of a child.

The next section in this guide is About Clinical Trials and it offers more information about research studies that are focused on finding better ways to care for people with cancer. Or, use the menu on the side of your screen to choose another section to continue reading this guide.  

Lymphoma - Non-Hodgkin - Childhood - About Clinical Trials

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2015

ON THIS PAGE: You will learn more about clinical trials, which are the main way that new medical approaches are tested to see how well they work. To see other pages, use the menu on the side of your screen.

What are clinical trials?

Doctors and scientists are always looking for better ways to care for children with NHL. To make scientific advances, doctors create research studies involving volunteers, called clinical trials. In fact, every drug that is now approved by the U.S. Food and Drug Administration (FDA) was previously tested in clinical trials.

Many clinical trials are focused on new treatments, evaluating whether a new treatment is safe, effective, and possibly better than the current (standard) treatment. These types of studies evaluate new drugs, different combinations of existing treatments, new approaches to radiation therapy or surgery, and new methods of treatment. Children who participate in clinical trials are often among the first to receive new treatments before they are widely available. However, there is no guarantee that the new treatment will be safe, effective, or better than a standard treatment.  

There are also clinical trials that study new ways to ease symptoms and side effects during treatment and manage the late effects that may occur after treatment. Talk with your doctor about clinical trials regarding side effects. In addition, there are ongoing studies about ways to prevent the disease.

Deciding to join a clinical trial

Patients decide to participate in clinical trials for many reasons. For some patients, a clinical trial is the best treatment option available. Because standard treatments are not perfect, patients are often willing to face the added uncertainty of a clinical trial in the hope of a better result. Other patients volunteer for clinical trials because they know that these studies are the only way to make progress in treating childhood NHL. Even if they do not benefit directly from the clinical trial, their participation may benefit future children with NHL.

Sometimes people have concerns that, in a clinical trial, their child may receive no treatment by being given a placebo or a “sugar pill.” The use of placebos in cancer clinical trials in this way is rare overall and not done at all in childhood cancer research. Find out more about placebos in cancer clinical trials.

Patient safety and informed consent

To join a clinical trial, parents and children must participate in a process known as informed consent. During informed consent, the doctor should list all of the patient’s options so that the person understands how the new treatment differs from the standard treatment. The doctor must also list all of the risks of the new treatment, which may or may not be different from the risks of standard treatment. Finally, the doctor must explain what will be required of each patient in order to participate in the clinical trial, including the number of doctor visits, tests, and the schedule of treatment.

Patients who participate in a clinical trial may stop participating at any time for any personal or medical reason. This may include that the new treatment is not working or there are serious side effects. Clinical trials are also closely monitored by experts who watch for any problems with each study. It is important that patients participating in a clinical trial talk with their doctor and researchers about who will be providing their treatment and care during the clinical trial, after the clinical trial ends, and/or if the patient chooses to leave the clinical trial before it ends. 

Finding a clinical trial

Research through clinical trials is ongoing for all types of cancer. For specific topics being studied for childhood NHL, learn more in the Latest Research section.

Cancer.Net offers a lot of information about cancer clinical trials in other areas of the website, including a complete section on clinical trials and places to search for clinical trials for a specific type of cancer.

In addition, this website offers free access to a video-based educational program about cancer clinical trials, located outside of this guide.

The next section in this guide is Latest Research and it explains areas of scientific research currently going on for this type of cancer. Or, use the menu on the side of your screen to choose another section to continue reading this guide.    

Lymphoma - Non-Hodgkin - Childhood - Latest Research

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2015

ON THIS PAGE: You will read about the scientific research being done now to learn more about this type of cancer and how to treat it. To see other pages, use the menu on the side of your screen.

Doctors are working to learn more about childhood NHL, ways to prevent it, how to best treat it, and how to provide the best care to people diagnosed with this disease. The following areas of research may include new options for patients through clinical trials. Always talk with your child’s doctor about the diagnostic and treatment options best for your child.

  • Genetics. One of the most important areas of research involves learning more about the genetic predisposition to developing childhood NHL and about how well genetic subtypes of NHL will respond to different treatments.

  • Immunotherapy. As explained in the Treatment Options section, immunotherapy (also called biologic therapy) is designed to boost the body’s natural defenses to fight the cancer. Research for NHL is investigating the use of monoclonal antibodies designed to kill lymphoma cells that make a specific protein and spare normal cells from the toxic effects of chemotherapy.

  • Targeted therapy. Targeted therapy is a treatment that targets the cancer’s specific genes, proteins, or the tissue environment that contributes to cancer growth and survival. For NHL, researchers are investigating specific drugs that affect the regulation of the lymphoma cell, while limiting damage to normal cells. Learn more about targeted treatments.

  • Expanded use of stem cell transplantation. Other research involves reduced intensity conditioning therapy (lower doses of chemotherapy and radiation therapy, aiming to reduce complications following a transplantation) followed by allogeneic stem cell transplantation for children with recurrent NHL.

  • Palliative care. Clinical trials are underway to find better ways of reducing symptoms and side effects of current NHL treatments in order to improve patients’ comfort and quality of life.

Looking for More About Latest Research?

If you would like additional information about the latest areas of research regarding NHL, explore these related items that take you outside of this guide:

  • To find clinical trials specific to your diagnosis, talk with your child’s doctor or search online clinical trial databases now.

  • Visit ASCO’s CancerProgress.Net website to learn more about the historical pace of research for childhood cancer.

  • Visit the website of the Conquer Cancer Foundation to find out how to help support research for every cancer type. Please note this link takes you to a separate ASCO website. 

The next section in this guide is Coping with Side Effects and it offers some guidance in how to cope with the physical, emotional, and social changes that NHL and its treatment can bring. Or, use the menu on the side of your screen to choose another section to continue reading this guide.  

Lymphoma - Non-Hodgkin - Childhood - Coping with Side Effects

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2015

ON THIS PAGE: You will find out more about steps to take to help cope with physical, social, and emotional side effects. This page includes several links outside of this guide to other sections of this website. To see other pages, use the menu on the side of your screen.

Fear of treatment side effects is common after a diagnosis of NHL, but it may help to know that preventing and controlling side effects is a major focus of your child’s health care team. This is called palliative care, and it is an important part of the overall treatment plan, regardless of the stage of disease.

There are possible side effects for every cancer treatment, but patients don’t experience the same side effects when given the same treatments for many reasons. That can make it hard to predict exactly how you will feel during treatment.  Common side effects from each treatment option for NHL are described in detail within the Treatment Options section. Learn more about the most common side effects of cancer and different treatments, along with ways to prevent or control them. Side effects depend on a variety of factors, including the cancer’s stage, the length and dosage of treatment(s), and your child’s overall health.

Talking with your health care team about side effects

Before treatment begins, talk with your child’s doctor about possible side effects of each type of treatment your child will be receiving. Ask which side effects are most likely to happen, when they are likely to occur, and what can be done to prevent or relieve them.

And, ask about the level of caregiving your child may need during treatment and recovery, as family members and friends often play an important role in the care of a child with NHL. Learn more about caregiving.

In addition to physical side effects, there may be emotional and social effects as well. Patients and their families are encouraged to share their feelings with a member of their health care team who can help with coping strategies, including concerns about managing the cost of your child’s cancer care

During and after treatment, be sure to tell the health care team about the side effects your child experiences, even if you feel they are not serious. Sometimes, side effects can last beyond the treatment period, called a long-term side effect. A side effect that occurs months or years after treatment is called a late effect. Treatment of both types of effects is an important part of survivorship care. Learn more by reading the Follow-up Care section of this guide or talking with your child’s doctor.

The next section in this guide is Follow-up Care and it explains the importance of check-ups after cancer treatment is finished. Or, use the menu on the side of your screen to choose another section to continue reading this guide.  

Lymphoma - Non-Hodgkin - Childhood - Follow-Up Care

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2015

ON THIS PAGE: You will read about your child’s medical care after cancer treatment is finished and why this follow-up care is important. To see other pages, use the menu on the side of your screen.

Care for children diagnosed with NHL doesn’t end when active treatment has finished. Your child’s health care team will continue to check to make sure the cancer has not returned, manage any side effects, and monitor your child’s overall health. This is called follow-up care. All children treated for cancer, including NHL, should have life-long, follow-up care.

This plan may include regular physical examinations and/or medical tests to monitor your child’s recovery for the coming months and years. Learn more about the importance of follow-up care.

Watching for recurrence

One goal of follow-up care is to check for a recurrence. NHL recurs because small areas of lymphoma cells may remain undetected in the body. Over time, these cells may increase in number until they show up on test results or cause signs or symptoms.

During follow-up care, a doctor familiar with your child’s medical history can give you personalized information about the risk of recurrence. Your doctor will also ask specific questions about your child’s health. Some children may have blood tests or imaging tests as part of regular follow-up care, but testing recommendations depend on several factors, including the type and stage of NHL originally diagnosed and the types of treatment given. 

Managing long-term and late side effects of childhood cancer

Sometimes, side effects may linger beyond the active treatment period. These are called long-term side effects. In addition, other side effects called late effects may develop months or even years afterwards. Late effects can occur almost anywhere in the body and include physical problems, such as heart and lung problems and second cancers, and emotional and cognitive (memory, thinking, and attention) problems, such as anxiety, depression, and learning difficulties.

Based on the type of treatment your child received, the doctor will recommend what examinations and tests are needed to check for late effects, such as heart problems and/or infertility (inability to have a child.) The risk of secondary cancers after treatment of childhood NHL is also possible, although the risks are low, about 1% to 2%. Yearly follow-up care by an experienced health care team is highly encouraged for survivors of childhood NHL. Follow-up care should address your child’s quality of life, including any developmental or emotional concerns.

The Children's Oncology Group (COG) has studied the physical and psychological effects that childhood cancer survivors face. Based on these studies, COG has created recommendations for long-term follow-up care for childhood, adolescent, and young adult cancer survivors that can be found on a separate website: www.survivorshipguidelines.org.

Keeping a child’s personal health record

You are encouraged to organize and keep a personal record of the child’s medical information. The doctor will help you create this. That way, as the child enters adulthood, he or she has a clear, written history of the diagnosis, the treatment given, and the doctor’s recommendations about the schedule for follow-up care. ASCO offers forms to help create a treatment summary to keep track of the cancer treatment your child received and develop a survivorship care plan once treatment is completed.

Some children continue to see their oncologist, while others transition back to the general care of their family doctor or another health care professional. This decision depends on several factors, including the type and stage of cancer, side effects, health insurance rules, and your family’s personal preferences. Talk with your health care team about your child’s ongoing medical care and any concerns you have about his or her future health.

If a doctor who was not directly involved in your child’s cancer care will lead the follow-up care, be sure to share the cancer treatment summary and survivorship care plan forms with him or her, as well as all future health care providers. Details about the specific cancer treatment given are very valuable to the health care professionals who will care for your child throughout his or her lifetime

The next section in this guide is Survivorship and it describes how to cope with challenges in everyday life after a cancer diagnosis. Or, use the menu on the side of your screen to choose another section to continue reading this guide.  

Lymphoma - Non-Hodgkin - Childhood - Survivorship

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2015

ON THIS PAGE: You will read about how to cope with challenges in everyday life after your child’s diagnosis of NHL. To see other pages, use the menu on the side of your screen.

What is survivorship?

The word survivorship means different things to different people, but it often describes the process of living with, through, and beyond cancer. In some ways, survivorship is one of the most complex aspects of the cancer experience because it is different for every patient and his or her family.

After active cancer treatment ends, children and their families may experience a mixture of strong feelings, including joy, concern, relief, guilt, and fear. Some people say they appreciate life more after a cancer diagnosis. Other families stay very anxious about their child’s health and become uncertain of how to cope with everyday life.

One source of stress may occur when frequent visits to the health care team end following treatment. Often, relationships built with the cancer care team provide a sense of security during treatment, and children and their families miss this source of support. This may be especially true as new worries and challenges surface over time, such as any late effects of treatment, educational issues, emotional challenges, sexual development and fertility concerns, and/or financial issues.

Every family faces different concerns and challenges. With any challenge, a good first step is being able to recognize each fear and talk about it. Effective coping requires:

  • Understanding the challenge your family is facing,

  • Thinking through solutions,

  • Asking for and allowing the support of others, and

  • Feeling comfortable with the course of action your family chooses.

It may be helpful to join an in-person support group or online community of childhood cancer survivors. Support groups also exist for parents of children diagnosed with cancer. This allows you to talk with people who have had similar first-hand experiences. Other options for finding support include talking with a friend or member of your health care team, individual counseling, or asking for assistance at the learning resource center of the center where you received treatment.

Changing role of caregivers

Parents, other family members, and friends may also go through periods of transition. A caregiver plays a very important role in supporting a child diagnosed with cancer, providing physical, emotional, and practical care on a daily or as-needed basis. Many caregivers become focused on providing this support, especially if the treatment period lasts for many months or longer.

However, as treatment is completed, the caregiver's role often changes. Eventually, the need for caregiving related to a child’s diagnosis of NHL will become much less or come to an end as your child gets older. Family counselors at pediatric cancer centers can help with this transition. You can also learn more about adjusting to life after caregiving in this article.

Healthy living after cancer

Survivorship often serves as a strong motivator to make positive lifestyle changes, often for the family as a whole.

Children who have had cancer can enhance the quality of their future by following established guidelines for good health into and through adulthood, including not smoking, maintaining a healthy weight, eating well, managing stress, and participating in regular physical activity. Talk with the doctor about developing a plan that is best for your child’s needs. Learn more about making healthy lifestyle choices.

In addition, it is important that your child has recommended medical check-ups and tests (see Follow-up Care) to take care of his or her health. Cancer rehabilitation may be recommended, and this could mean any of a wide range of services such as physical therapy, family or individual counseling, nutritional planning, and/or educational assistance. The goal of rehabilitation is to help survivors and their families regain control over many aspects of their lives and remain as independent and productive as possible.

Talk with your doctor to develop a survivorship care plan that is best for your child’s needs. The Children’s Oncology Group has long-term follow up guidelines (see Follow-up Care) that may be helpful to review with your doctor.

Looking for More Survivorship Resources?

For more information about cancer survivorship, explore these related items. Please note these links will take you to other sections of Cancer.Net:

  • Survivorship Resources: Cancer.Net offers a lot of information and resources to help survivors cope, including specific sections for children, teens, and young adults. There is also a main section on survivorship for people of all ages.

  • ASCO Answers Cancer Survivorship Guide: This 44-page booklet (available as a PDF) can help with the transition into life after treatment. It includes blank treatment summary and survivorship care plan forms.

  • Cancer.Net Patient Education Video: View a short video led by an ASCO expert that provides information about childhood cancer survivorship.

The next section offers Questions to Ask the Doctor to help start conversations with your child’s cancer care team. Or, use the menu on the side of your screen to choose another section to continue reading this guide.  

Lymphoma - Non-Hodgkin - Childhood - Questions to Ask the Doctor

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2015

ON THIS PAGE: You will find some questions to ask your child’s doctor or other members of your health care team, to help you better understand your child’s diagnosis, treatment plan, and overall care. To see other pages, use the menu on the side of your screen.

Talking often with the doctor is important to make informed decisions about your child’s health care. These suggested questions are a starting point to help you learn more about your child’s cancer care and treatment. You are also encouraged to ask additional questions that are important to you. You may want to print this list and bring it to your child’s next appointment, or download Cancer.Net’s free mobile app for an e-list and other interactive tools to manage your child’s care.

Questions to ask after getting a diagnosis

  • What type of NHL has been diagnosed?

  • What is the stage of the disease? What does this mean?

  • Can you explain my child’s pathology report (laboratory test results) to me?

Questions to ask about choosing a treatment and managing side effects

  • What are the treatment options?

  • What clinical trials are open to my child? Where are they located, and how do I find out more about them?

  • What treatment plan do you recommend? Why?

  • What is the goal of each treatment? Is it to eliminate the cancer, help my child feel better, or both?

  • What chemotherapy or immunotherapy will my child receive?

  • Should my child receive a bone marrow/stem cell transplantation?

  • Will my child receive radiation therapy?

  • Will my child need to stay in the hospital? If so, for how long? How often?

  • Who will be part of my child’s health care team, and what does each member do?

  • Who will be coordinating my child’s overall treatment?

  • What are the possible side effects of this treatment, both in the short term and the long term?

  • How will this treatment affect my child’s daily life? Will he or she be able to go to school and perform his or her usual activities?

  • Will this surgery affect my child’s ability to become pregnant or have children in the future? If so, should we talk with a fertility specialist before treatment begins?

  • If I’m worried about managing the costs related to my child’s cancer care, who can help me with these concerns?

Questions to ask about planning follow-up care

  • What is the risk of NHL returning? Are there signs and symptoms I should watch for?

  • What long-term side effects or late effects are possible based on the cancer treatment my child received?

  • What follow-up tests will my child need, and how often will he or she need them?

  • How do I get a treatment summary and survivorship care plan to keep in my family’s records?

  • Who will be coordinating my child’s follow-up care?

  • What survivorship support services are available to my child? To my family?

  • Whom should I call for questions or problems?

The next section in this guide is Additional Resources, and it offers some more resources on this website beyond this guide that may be helpful to you. Or, use the menu on the side of your screen to choose another section to continue reading this guide.  

Lymphoma - Non-Hodgkin - Childhood - Additional Resources

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2015

ON THIS PAGE: You will find some helpful links to other areas of Cancer.Net that provide information about cancer care and treatment. This is the final page of Cancer.Net’s Guide to Childhood Non-Hodgkin Lymphoma. To go back and review other pages, use the menu on the side of your screen.

Cancer.Net includes many other sections about the medical and emotional aspects of NHL, both for your child and your family members and friends. This website is meant to be a resource for you and your loved ones from the time of diagnosis, through treatment, and beyond.

Beyond this guide, here are a few links to help you explore other parts of Cancer.Net:

This is the end of Cancer.Net’s Guide to Childhood Non-Hodgkin Lymphoma. Use the menu on the side of your screen to select another section to continue reading this guide.